(00:00:00) This is an American radio works documentary the hospice experiment. I'm Deborah Amos death is unamerican an affront to the American dream historian Arnold toynbee wrote those words in 1969 a time of big change thousands of young anti-war demonstrators have gathered not to go to school tomorrow the next day or next year until we have got our demands met peace and civil rights environmentalism and women's Liberation and this is why I'm marching. But a quieter Revolution was underway to one led by a few middle-aged women who wanted to change our way of death. They were the founders of the hospice movement their movement did not involve marches and until now their story has mostly gone Untold this our John be one explores the birth of the hospice movement. (00:00:59) I'm gonna tell you something, (00:01:02) you know, you think about people on death row. That was my first thought (00:01:08) on death row. (00:01:11) How do you beat (00:01:17) the family matron walks gingerly as she arrives for a gathering in her Honor on a mild January day her granddaughter's modest one-story house is on a cul-de-sac in Fayetteville, North (00:01:28) Carolina who is smells good? I was born October 23rd 1925. Mary Kay shinae most (00:01:43) people call her Kitty shinae. She used to be plump and Rosy cheeked the owner and operator of beauty shops in Myrtle Beach South Carolina. Now, she weighs just 90 pounds and her face has a yellow pallor but her gaze is sharp and she still in command when she wants to (00:02:00) be we take the drippings. We put 4 cups of water and forth back and I do agree me. Oh, she's the center. I'm totally (00:02:13) Donna Lafave of Chapel Hill is one of Kitty's (00:02:15) daughters. She's very generous and giving she's a kind of grandmother. That was always in the floor play with your kids. Oh, here we are. We got our baby now, we'll make a picture. So when she was diagnosed it was pretty devastating for the family. I have (00:02:34) pancreatic cancer. It meant stages by the time doctors found the tumor and kitties pancreas four months ago. It was too big and too late. That's where hospice starts with a decision to stop fighting for a cure my doctor David Goldstein. Suggested that I go to (00:02:56) hospice because it was nothing that could be done. And I am so glad he did because I (00:03:04) have seen what chemo has made people sicker than the ailment that they had and they died anyway. My mother had radiation and it really burned her (00:03:17) up. So I have had a productive life rather than be sick (00:03:24) with my hair coming out everything in other words, even though cancer is killing Kitty. She's not dying today or spending her energy fighting for life. She's living and little by little letting go (00:03:44) that's a hardest thing when my kids were coming home. I'd always have the male's plan what they wanted all that and so at Christmas time. I (00:03:54) was had to turn everything over to them. (00:03:58) Only two things I made the dressing in the coleslaw and I thought oh my God, it's gonna be so hard on them. They won't be able to stay did the greatest job. You would not have believed that table so I knew right then I didn't need to be in the kitchen anymore. Okay, we're dressing. We will the next turn. (00:04:36) These days about 3 in 10 terminally ill patients get Hospice Care in the United States hospice has become commonplace just a generation after it started as a fringe movement. Its Founders are women of kitty shanae's Generation by far. The best known is Elisabeth Kubler-Ross in 1969, the swiss-born psychiatrist published the international bestseller on death and dying in the 70s and 80s. She traveled the world lecturing on what she called the West's death-denying culture and her theory about the five stages of grief a dying person typically goes through on death and dying is still read in some 30 languages, but Kubler-Ross has been out (00:05:18) of the public eye for years. We are at the Out of Africa Wildlife Park. side of Phoenix Hello, sweetie. Yes, you're pretty I take you home. (00:05:36) Anytime Kubler Ross is in her late 70s now she uses a wheelchair after a series of Strokes in the 1990s. She's small and hunched. She wears a baseball cap over her gray hair only occasionally. Is she recognized in (00:05:51) public. I want to say hello and tell you how much I appreciate what you've done for for all of us your word. Hold on to me. All right, (00:06:03) a young zoo worker Peter Carter gives Kubler-Ross a ride and golf cart. (00:06:07) What is your name? He (00:06:10) told his passenger helped Pioneer the hospice movement Carter gets (00:06:14) wide-eyed. I can't tell you. What a wonderful thing that did. I mean My Grandmother Had A Alzheimer's and you know, it helped them Independence and support and I mean, you know dignity that was it. Okay, how about get all emotional now? (00:06:32) Kubler-Ross made a mark on Western culture that will clearly outlive her, (00:06:37) you know those stages of Kubler-Ross. One's the dying go through (00:06:43) anger denial. bargaining (00:06:49) depression depression Acceptance (00:06:52) in the recent movie The Life of David Gale warning Lynn. He's terminally ill character talks with a friend played by Kevin Spacey. (00:06:59) Not up to the job of dying person marveling at Blades of grass lecturing strangers the relish every moment. (00:07:08) That's the stereotype the Kubler-Ross and the hospice movement offered incense and death with a smile but it's never been that simple passing her days now in a Scottsdale group home. Kubler-Ross herself is anything but Serene, she cusses and smokes and though she can be warm and witty. She's often crotchety. (00:07:29) I wasn't lucky enough to die waiting to die supporting forces. And then I was angry at God I gave him he'll to God I said yeah, I'm not any better than Hitler himself and he left his head of (00:07:51) we Kubler-Ross talks to God. It seems God talks back. But whatever the popular perception Kubler-Ross never said, there was one right way to die here. She is in a radio interview back in 1975. The (00:08:05) question is really what does it mean to die with dignity to die with dignity to me means to die within your character. That means there are people who have used in aisle all their lifelong. They will most likely die with it in the state of denial. There are people who have been fighting cripples all their lifelong and by God it they want to die that way and to those patients who have to help them to say it's okay (00:08:35) to grasp why hospice emerged and why it matters it helps to remember how medicine evolved in the United States and some other rich countries. Eric Cassell is a retired New York physician and Cornell University Professor who has written widely on the care of dying and suffering people, (00:08:53) you know, the famous picture of the physician sitting at the bedside of a sick (00:08:58) child two British picture. He sitting there like that. He's watching the child died. (00:09:04) Why is he what do you need a doctor to do that for (00:09:08) well because nobody else can do that. They can't watch their child died. He can do that and make sure the child's kept covered (00:09:16) and these things Nobody Does that now (00:09:20) with the rise of modern technological medicine in the last century doctors no longer sat and watched they worked furiously to keep people alive with heroic surgeries and life support machines Kubler-Ross critique that reflex in a 1984 PBS documentary. We have perfected the most sophisticated machines to (00:09:40) keep or dysfunction never ask the permission of the Patient is that really what they want to me? That's a terrible at the humanization of the experience of (00:09:51) dying like a care of the dying before their (00:09:53) hospices and people died badly. We never gave enough pain medication (00:09:59) never Casal remembers that in the 1950s hospitals avoided the most effective painkillers, like morphine for fear of Addicting patients. Never mind. The patient was going to die anyway, and ninety percent of doctors never told their cancer patients. They had the disease you said with that's lying. (00:10:18) Well, we didn't do it because we were Liars (00:10:21) we did it because we thought that if you told somebody that had cancer that was the end because they would say well, what are you going to do and we would have to (00:10:27) say we don't know what to do. We you know, we don't have anything to do (00:10:33) starting in the late 1960s Elizabeth. Kubler-Ross was the leading spokesperson for the idea that dying people needed more dignity and better care. But the real founder of the hospice movement lives in London, she's a formidable white-haired English woman. Most Americans have never heard of I'm (00:10:51) Cicely Saunders and my story and this field goes right back to 1948. But I was a social worker meeting a young polish. Jew who had an inoperable cancer. I became very fond of (00:11:06) him. In fact Saunders and her patient David to asthma fell in love. She was 29 then an Oxford graduate and former nurse and a devout Christian. She was moved bite asthma's deep anguish. Not just the pain from his tumor. He was also sad and (00:11:23) alone. I remember him saying I just a rude sort of fellow He told me how he'd been brought up in the Warsaw Ghetto and his grandfather had been a rabbi but in the way he left it all behind, but I think he just felt he was just not an important (00:11:42) person in talking with Taz Masson ders found her life's mission to he's all kinds of pain at the end of life pain, not only physical but also emotional psychological and spiritual her first step was to volunteer at something called st. Joseph's Hospice in London. Not quite a hospice in the modern sense, but a small religious home for the (00:12:03) dying. They had no drug charts. No patient's notes. No Ward reports. They had tender loving care by some artists Roman Catholic Nuns with Irish nursing auxiliaries. They were lovely (00:12:18) the patients at st. Joseph's were seen as Beyond medical help for that. Very reason the nuns could ignore prevailing Scruples about pain (00:12:26) control there. I saw All the regular giving of oral morphine for the first time and realized that here was the answer to the control of constant pain that I had never seen in hospital because people were having pain first they were earning their Morphine by having pain. This was a very different scene (00:12:47) Saunders learn to administer morphine before pain grip the patient not after to stay ahead of the pain rather than chasing it. She wanted to take such practices beyond the religious home to more dying patients in a medical setting but first she says she got some advice from a surgeon friend. He told her that before setting out in effect to launch a new branch of medicine. She'd better become a doctor (00:13:11) first. It's the doctors. Who does that the dying and the so much more to be learned about pain and you will only be frustrated if you don't do it properly and they won't listen to you. So with my father's money bless him and his encouragement. I a medical student at the age of 33 (00:13:35) when she got her medical degree in 1957 Sanders became the first modern doctor to devote her career to dying patients. It would take her another 10 years to open the world's first modern (00:13:47) hospice. Coming up in a minute Kitty shanae's experience as a hospice patient and in 1966 Elizabeth Kubler-Ross starts interviewing dying patients in Chicago angering her fellow (00:14:04) doctors and started screaming at her saying things like what kind of a ghoul are you and I you know this (00:14:13) not I'm Deborah Amos, you're listening to the hospice experiment from American radio works the national documentary unit of Minnesota Public Radio our program continues in just a moment from NPR National Public Radio. (00:14:30) For more on the hospice experiment. You can go to American radio works dot-org for more on this program and all the other American radio works documentary. If you missed the first part of our broadcast today of the hospice experiment, it will be rebroadcast tonight at nine (00:14:46) o'clock. This is the hospice experiment from American radio works. I'm Deborah Amos in 1966 psychiatrist Elizabeth Kubler-Ross started interviewing dying hospital patients in Chicago asking them what they wanted and needed the experience would change Kubler-Ross has career and her life what she didn't know in London Cicely Saunders was building the world's first modern hospice and a group in Connecticut was beginning to plan for America's first hospice program. John be one picks up our story on the hospice movement (00:16:06) when she was diagnosed with pancreatic cancer in the fall of 2003 Kitty. Shanae's doctor estimated. She died within six months. (00:16:17) Hey, good morning. How are y'all, (00:16:21) Kitty? Became a patient of UNC hospice a branch of the University of North Carolina Health System her hospice nurse role in Severson visits about once a week at the townhouse in Durham where Katie lives with her husband and I really feel good. Well, you look great. Thank you. You sleeping. Well, yes, four months after Her diagnosis Kitty has done better than expected. She took a cruise and a Christmas vacation at the beach with her family. She and her husband are still managing their lives with regular visits from kitties daughters, but her digestive system is faltering. She takes medicines for pain and other symptoms where you taking the regular in the Phenergan is Fennekin, that's for nausea, but it gives you such a dry mouth right and you don't can't breathe very well, you (00:17:13) know, I took a Darvocet Just go to sleep. (00:17:16) But Severson stays for a full hour. He takes Kitty's Vital Signs 116 over 62 and the to chat like friends the conversation ranges Two Kitties family history and her children and to Maurices Health Katie's husband is 90 a native Germany who came to the US before the second world war Maurice has a batch of illnesses to he's so sick. He may soon become a hospice patient himself. Are you feeling relatively stable at this one felt pretty good. Yeah, just very tired. I have no energy. I don't know whether that's the lung (00:17:58) cancer or asthma or emphysema, but I have absolutely no energy. No, no go up and go right (00:18:09) hospice tries to ease the sometimes Dreadful realities of terminal illness, but it can't erase. In talking with Kitty and her family Severson mixes optimism with gentle frankness, but your appetite is still strong go to bed at night dreaming about food, (00:18:27) but I can't eat, you know, you can only (00:18:29) eat just a little bit of time. But you know what you people take for granted and I took for granted like a piece of bacon and you realize you're never gonna have a piece of bacon again too much of an insult, which is a great fried foods can be disruptive (00:18:45) can't you can't do it, right? So whatever for another one more day at the time (00:18:52) it is sort of you've been doing so well for a good long period of time now, but there will be invariably so (00:19:00) I know you don't have to tell me. It's not uphill is staying here. You know, I think (00:19:09) really we weren't really sure we were so ready for Mom to go on hospice kitties oldest daughter Theresa Harrison visits often from her home three hours away in Spartanburg, South Carolina. She says she wanted her mother to fight the cancer somehow to at least try a special diet. She'd read about online and Theresa wonders if Kitty shouldn't have waited until death was closer before starting hospice care. (00:19:34) I think I felt that them coming in early was like a constant. It's a reminder every time they (00:19:40) walk in the door (00:19:42) the that their illness that they're (00:19:44) dying that they're dying. You know, (00:19:47) I don't think I've ever felt like that (00:19:51) but Kitty had her own doubts when her doctor first brought up hospice. My reaction wasn't favorable because I didn't know that much about how (00:20:00) specs it was more like a group session. That's what I (00:20:04) saw. (00:20:06) In my mind, I thought of (00:20:08) it your image of it was that it was sort of a touchy-feely thing, uh-huh to make you try to make you feel better. And that was it sit with you through your pain for her. She says hospice has turned out to be above all practical medical help. Like kitty most hospice patients are cared for at (00:20:27) home. Are you have someone who wants to wait to take all your Vital Signs? And I remember going with family with cancer and we had to go out once too weak (00:20:39) to a doctor (00:20:41) and sometimes a person would be hardly able to get a cart as so this is (00:20:46) just wonderful this way. I don't have to ask someone to stop at the drugstore for me. (00:20:53) They deliver it for (00:20:54) me in its 30-year history in the United States hospice has evolved some especially with advances in pain medication, but its core principles are constant. Control of symptoms attention to the patient's psychological and spiritual needs care and support for the family as well as the patient these ideas come straight from the English nurse turned. Dr. Cicely Saunders starting in the late 1950s. She wrote articles and medical journals and talk to whoever would listen on both sides of the (00:21:26) Atlantic but it was just very exciting to meet people who are interested in that you weren't just some crazy person who was looking at some vague dream, but there were people saying there is a need and we know it and we're interested and will join one (00:21:42) of the first Americans to respond was a Connecticut nurse named Florence (00:21:45) walled. (00:21:50) She used to be five foot two, but now in her mid 80s, she's down to an even five feet Florence walled walks the gleaming Halls of the Yale New Haven Hospital with Bernhard Litton a urologist and professor emeritus Litton leads us into Of those circular plunging Medical School lecture Halls are standing the fit campy theater the 1963. I think Sicily came here and gave her first talk on hospice (00:22:17) care in 1963. We were struggling with patients particularly the cancer patients who are being treated with surgery and with radiation despite the fact that their condition and was worsening. The Curative treatment was (00:22:34) pursued at the time Wold was Dean of nursing at Yale. She listened and thrall Das Saunders describe her experimental work using drug cocktails and tender attention to keep dying cancer patients alert and comfortable (00:22:48) to us. She was a nurse. And that was the epitome of nursing. So it was a very very moving experience for me (00:22:59) wild was so inspired that within a couple of years. She resigned her deanship at Yale. She started working with a small group in New Haven toward founding the first hospice program in the United States. It's no accident that the hospice movement came along when it did says author Eric Cassell the private life. (00:23:22) Became public in the 1960s. That's extremely important to understand that because that made allow this all (00:23:28) possible until the 60s death was sort of like Saks not a topic for polite discussion, but social turmoil was shaking the culture loose the book everything you've always wanted to know about sex but we're afraid to ask was published in 1969 the same year as Elizabeth Kubler-Ross has on death and (00:23:47) dying suffering used to be sat. Nobody talked about death. Even I once gave a lecture on the care of the dying in 1972 and somebody stood up before that got up in from the audience to say this is outrageous. You have no right to talk about these these are private matters see and now it's not a private matter at all. Is it so this was a time of protest it was a time of protests against the Vietnam War but it was also the Civil Rights Movement. Then there began to be talked about patients (00:24:15) rights Florence walled was the daughter of New York intellectuals and a supporter of the Civil Rights Movement. She came to See better care for dying patients as a matter of human rights for her part. Kubler-Ross seems to have been wired for Rebellion Elizabeth Kubler grew up in an upper middle class family in (00:24:34) Zurich. My father absolutely was convinced. I had to work in this office and become sick of this job not sick at the number one. I'd be anything else but not the second thing and that gave me the energy to do what I needed to do. What I love to do (00:24:54) Elizabeth. Wanted to be a doctor. She found jobs in Laboratories at the end of World War II she volunteered to go to Poland and work with sick and starving people. She saw the Nazis death camp at my Des neck and experience. She later wrote about and describe two friends that she was highly impacted by seeing the evidences of the deaths of thousands upon thousands of thousands of children and started. I think we're interested in death and dying started right there. Wally muy Mara is a retired Episcopal priest and a friend to Kubler-Ross since 1966 by then Kubler-Ross had Married An American and taken a job as a psychiatrist at the University of Chicago. Amara was a Divinity student and a chaplain at Chicago's Billings hospital. He got assigned to work with Kubler-Ross on a (00:25:44) Virtual (00:25:45) seminar in which She interviewed dying (00:25:47) patients. The moldings test-taking thing for you right now is that you can speak well. (00:25:57) The PBS program Nova filmed Kubler-Ross sitting with terminally ill people in their families. This woman was paralyzed by disease and could barely talk. So her daughter joined the (00:26:08) conversation one thing mother wanted to ask you in the thing that bothers her is that she feels that she's since she's unable to use her body what purposes she serving and she feels like for anybody to live they should have some purpose in life and she can't see what her purpose is now. Yeah. Do you think it's more important to hang around the house using the pool cleaning windows? Oh is that holds up poop purpose and building how to receive we got her there and it didn't give children my believe a little bit down there with mother of them for so many years. Don't you think that teaches them something (00:26:58) in our Chicago seminars in the 1960s Kubler-Ross and Amara interviewed terminally ill patients before a classroom of medical and Divinity (00:27:06) students. The Seminoles were very popular. University hated me Well, they had so many (00:27:16) Hang-Ups and what they were concerned about was that if the patient's heard the word death or talked about that with it somehow would destroy their peace of mind their peace of mind and any sense of hope Amara recalls one Furious Doctor Who confronted Kubler-Ross in the crowded lobby of the hospital and started screaming at her saying things like what kind of a ghoul are you and you know this not seeing patients your your irresponsible seeing patients without permission. And so and she would simply she simply stood there. Geez, I never see a patient without permission and he took a step towards her and I took a step towards him. You know, I'm six foot have been six foot ever since I was seven and I was a heck of a lot better shape than I am now, but GI. Feeling her grab my coat, you know grab my coat on the side and give it a firm yank like this snow and I knew she was there. She was not in the least bit threatened by this guy those interviews with dying patients were the basis for Kubler-Ross has book on death and dying its publication made a sensation. But the University of Chicago said Kubler-Ross is work wasn't real medical (00:28:41) research. I said 5,000 Pages unlocked enough, huh? Just not enough research. No, it's not science. I should tough shit. That's your problem. Not (00:28:53) mine Chicago declined to offer Kubler-Ross tenure and she and the university parted ways. (00:28:59) But by that time she had become so well-known Florence wall that primarily nurses were the ones who asked her to speak and she was soon going all over so essentially what she did was To have a independent University of her own and they will share with you what this specifically that you can do for them so they can die with peace and without fear when I started this work. I was very much hated for sitting with dying patients making us be famous for dying patients and the decade later I received so many. Dr. Chris. I can't even count them and I don't understand that because of never invented anything. I've never done anything except sit with people and listen to them and hear them when (00:29:52) people heard or read Kubler-Ross and wanted to take action. They had a model in 1967 Cicely Saunders had opened the world's first modern Hospice in a leafy part of South London. She named it st. Christopher's after the patron saint of (00:30:07) Travelers one of the important things to say about st. Christopher's is that what you're seeing here? It's just the building and I say that really quite with some emphasis because hospices are not buildings their (00:30:24) philosophies Barber Monroe is executive director of st. Christopher's hospice. It's now a 15 million dollar a year institution the size of a small hospital with 48 beds Gardens aromatherapy and a library but most of its 500 plus patients get care in their homes. Cicely Saunders still comes to her office at st. Christopher's even though she's in her mid 80s and there's already a big bronze bust of her in the lobby the bus she blames on a donor he gave us (00:30:55) a very good donation here, but rather on condition that I had my head down by this Chap and that it was put in reception and I said, well, it can't go into reception till I'm dead but I was (00:31:08) overruled st. Christopher's still helps to lead research on things like pain medication and how to ease the grieving. Process it's also a worldwide training center for those who care for the (00:31:19) dying. One of the things that we're very committed to in. Our education programs is supporting the developing world. And we've had people here from Africa Latvia Russia, India and Swaziland Vietnam from its (00:31:34) Beginnings. St. Christopher's set an example for North America to Florence walled worked here before found in Connecticut Hospice in 1974. So did dr. Ball for Mount a cancer surgeon from Montreal who became another key figure in the hospice movement. He came across Saunders his name in 1973 while reading on death and dying by Kubler-Ross. He picked up the phone and called Sanders in London. She came on the line and I explained who I was and told her that I was interested in coming to see what they were doing. And she said I know you you want to come to London with Wife see a few plays then come over to st. Christopher's have a quick walk around and have a look and then go home. Well, I won't have it you be prepared to come over roll your sleeves up and get to work for a full week and I'll have you and she was absolutely right. I was planning to bring my wife with me and see if you plays Mount made the trip without his wife. I was deeply impressed. That's where I wanted to die. First of all two years later in 1975 Mount founded the world's first hospital-based hospice. He called it a palliative care unit at the Royal Victoria Hospital in Montreal starting in the mid 70s hospice programs sprouted by the dozens then hundreds in 1982 Congress passed a landmark law requiring Medicare to pay for hospice placing it in the mainstream of American Medicine. Today more than 3,000 hospice programs serve about 900,000 patients a year in the United States and there are now what is it 8000 programs in over a hundred countries around the world that have grown from the experience of st. Christopher's hospice London period and the work of Cecily (00:33:36) Saunders I'm Deborah Amos still to come a focus on meaning at the end of life and kitty Shanae faces her last days. I don't want the time to come that. I don't have any control over myself, right? That's what I want to go, right. You're pretty tough. I hope so I hope so we get there. To see photographs of kitty Shanae and links to more information on hospice. Visit American radio works dot-org. There's also a place to share your hospice story. That's an American radio works dot-org major funding for American radio works comes from the Corporation for Public Broadcasting and members of Minnesota Public Radio funding for the hospice experiment provided by the JL Foundation. You're listening to the hospice experiment from American radio works the national documentary unit of Minnesota Public Radio. I'm Deborah Amos our program continues in just a moment from NPR National Public (00:34:58) Radio. This is midday on Minnesota Public Radio. If you missed the first part of this documentary the hospice experiment from American radio works. You can hear the complete broadcast again tonight at nine o'clock on Minnesota Public Radio. (00:36:00) This is the hospice experiment from American radio works. I'm Deborah Amos in setting out to treat terminally ill patients the founders of the hospice movement. Wanted to care for the whole person Body Mind and Spirit hospice workers encourage dying people together with their families to look back on the patient's life and to find meaning in that life. The approach was apparent in the last week's of kitty shanae's Life as a hospice patient in North Carolina, John be one has the final segment of the hospice experiment (00:36:35) Cicely Saunders and Florence Walter both in their 80s more than 40 years after they met at Yale. The to remain close (00:36:43) friends (00:36:50) walled is visiting Saunders at st. Christopher's Hospice in London to smartly dressed white haired women in glasses and sensible shoes wall. Expects the new bronze likeness of Saunders in the lobby then gives its Flesh and Blood subject a blunt (00:37:05) critique. I wouldn't want to cross her. I must say (00:37:14) both women are still active Saunders at st. Christopher's walled promoting Hospice Care in prisons, but they talk easily about being near the end of their own (00:37:24) lives. But of course, I always know that they're going to be things that I haven't finished you had before I die. I'd love to tidy my desk. Yes, we do. We won't know (00:37:36) the three hospice Pioneers whose stories we've told here Saunders walled and Elizabeth Kubler-Ross all say they have no fear of dying having seen much of it. The three have widely differing spiritual views Saunders The Devout Christian Walden agnostic, Jew and Kubler-Ross a believer in New Age spirit guides. Nonetheless. They all agreed from the start. Psychological and spiritual questions are so important at the end of life that they should be part of hospice care Cicely (00:38:07) Saunders. One of the people who's had an enormous impression on me and threw me on the hospice movement as hell is Viktor Frankl the Jew who wrote Man's Search for meaning when he came out of the concentration camps. And I one of the things he firmly says we cannot give to somebody else a sense of meaning for their lives. All we can do is to help them find it for themselves (00:38:32) Sanders is quick to add that some hospice patients die without tying up their lives. Neatly leaving behind regrets and tattered relationships still walled uses a striking phrase one. That sounds at first like a contradiction. (00:38:47) What I have found is that people can die in good (00:38:52) health that is with a sense of (00:38:54) fulfillment and feel the satisfaction of I have a good life. Sometimes people don't have time or opportunity to go through that kind of thing, but it is possible to do and that's one of the very exciting challenges you have as a caregiver. It's a tent I mean the 16 and we have lots of snow. It looks like a Wonderland out there with (00:39:27) all the snow this morning. It's mid-February more than five months after doctors found a large tumor in Kitty. Shanae's pancreas. The cancer has attacked her liver now to day by day her body shows mounting signs of (00:39:42) failure. Well, I got up this morning. I thank God for the night, but it wasn't feeling very good real swollen foot have been down since Sunday in the bed just not having the good days. I have been having stomach hurts Fair. (00:39:59) Bad the circle around Kitty has closed. She rarely leaves the apartment she shares with her sick husband Maurice besides her hospice nurse. Her only visitors are close family. (00:40:12) What year was that Mom? That was (00:40:15) 68 Kitty and her daughter Theresa Harrison. Look at photos from Kitty's years in the hair salon business in South Carolina. (00:40:23) What ciri had that a bouffant we had what you call that you have to I had to follow the style. That's right. Whatever it was in you had to go with it on. My mother was very foxy. You should see these pictures. Oh my god, you might dream of Genie or something. (00:40:40) Kitty says she's loved her life, but it was hard Growing Up near Fort Bragg in Fayetteville, North Carolina. She married a soldier at age 15 to escape her alcoholic mother. She says some of her biggest dreams Were Out Of Reach. I always wanted to be a (00:40:56) dancer are a secretary. That was two (00:41:01) things. I really wanted by in those days. We didn't have much do it kid. He moved a lot with her husband an army officer after raising four children, they divorced and kitty later married her current. Maurice Shanae her biggest blows were the loss of two adult children a son in a plane crash and a daughter to disease Teresa says, her mother's stoical response to terminal illness is typical of her. (00:41:27) Well, let us know that she can't handle something. So don't you think that's right. Mom people have to understand the sheets on top of it. No matter what she's going through. Otherwise, it's a weakness. (00:41:42) No, because I always had to be strong. (00:41:49) Well, alright is this morning at 6:00? And I pray to God, please. Let me live through the day and thank you for last night. I know it's selfish but I just want to live on (00:42:01) kid. He gets another piece of hard news her sister who lives in Virginia is near death Kitty's hospice nurse Rowland makes his weekly visit as Kitty plans to see her sister one. Last time. Are you nervous about this trip at all? No, you must be sad though to think of (00:42:18) yes, but you know, it's better to see our lives and Dad (00:42:23) right Roland Severson is a youthful 52. He has kind eyes and a teenagers had a brown hair since the subject of death has come up. He turns the talk to kitties future. You haven't seemed very scared of I'm dying. (00:42:40) I don't want to die but one. And I pray so hard every morning. But you know, I don't have any choice. (00:42:50) I've noticed that but in some of your interactions (00:42:52) with Kitty you're sort of (00:42:55) reminding her that things are common as gently as possible. What's the importance of that? I think it's helpful for families and patients to not be continually reminded of their of their dying but to not lose sight of those things that are of value in the Here and Now each day is is such a unique opportunity for folks to engage with each other in a in such a real and unalloyed way, you know, a lot of times you go through life (00:43:28) you get to this point you think well, why didn't I do so in some different but it's the letters I've received that has just put me so bright with a lot of things through life the charity work. I did all the people I got into business it would start to work for me and just the other day. I had one from a friend telling me about dying and what I had left (00:44:01) behind. Sometimes we never know what we left behind (00:44:07) it was good. (00:44:10) It's a blessing. I've been a hospice nurse for six years. Did such an intimate process then we become almost a part of the family sometimes before switching to hospice Roland worked as a nurse in a VA hospital. He says it was sad watch old men died in hospital beds. Sometimes alone with nurses too busy to do much more than give medicines hospital is not a great place to die as a hospice nurse role in visits his patients in their homes typically sitting for an hour or more and acting as friend counselor, even Minister. It's a privilege for us engaging in that kind of delicate beautiful relationships conversations. Just sort of layering back who we are as individuals and how we meet the challenges that face (00:45:04) us. I don't want the time to come that. I don't have any control over myself, right? That's what I want to go, right? You're pretty tough. I hope so. I hope so when we get there. (00:45:22) You're quite a woman. I hope you wrote one. Thank you so much. You've been so good to me. As February whines down Kitty weakens, the cancer starts to shut her body down. She sleeps more and more and manages to eat less and less her husband Maurice sees what's coming? I love kitties so much and I (00:45:46) still have (00:45:47) not very accepted the fact (00:45:51) that very shortly. I may be (00:45:52) alone Maurice has lung cancer is now considered terminal and he's getting Hospice Care to the second week in March Kitty's disease overwhelms her her daughter. Teresa comes to stay with her and Maurice to take care of them with help from (00:46:08) hospice. Yeah, but hard time breathing mom. Mom are you having a hard time breathing (00:46:15) kitties in bad her eyes closed her mouth open an oxygen tube beneath her nose to ease her breathing. She's too weak to talk even to swallow sometimes when someone tries to speak to her. She seems to try mightily to rise to the surface forcing her eyes half (00:46:33) open (00:46:36) stepping outside the room Roland tries to prepare Teresa for what may be the last day of her mother's life, but she's comfortable and she can sleep. You know, she's just really withdrawn sheet personality dissolves, right? So that the basic core human functions of breathing and heartbeat are really the main thing that are feeder (00:46:59) Cooling and I noticed did it if people usually fight to the very end, no oftentimes folks just sort of slip away, right? They met she may open your (00:47:13) eyes and look (00:47:14) around. It might be sort of a (00:47:18) pronounced Awakening (00:47:20) for a few moments before she closes her eyes and slips away. It would not be uncommon. (00:47:31) After a couple of hours roll and gets ready to leave. He sits on the edge of Kitty's bed holds her hand and moves close see tomorrow. (00:47:41) God bless you. Get some rest now. Right here (00:47:49) when it's time Roland tells her just crossover. That evening about six hours later Kitty suddenly gets animated sits up and tries to rise Teresa calms her with a dose of drugs then speaks to her. (00:48:09) I just told her that everybody who's died that she loves was waiting for and that everybody loves her. I told her that God was waiting there. She was a mighty warrior that he was waiting for her. And I believe that Mom is the true warrior with (00:48:30) Kitty calm. Again. Teresa leaves the room for about 10 minutes when she goes back in Kitty's gone. Just a couple of hours later Teresa sits in her mother's living room with Roland. (00:48:44) I am very very thankful. I have to look at it that way I think God brought me here. He brought everybody together and he let my mom died without suffering. I know that the breathing was bad, but that was just this week really that it was to that degree and she wasn't in horrible Agony from cancer pain. She was blessed. She was blessed. I think I almost told her that you are a blessed woman (00:49:26) a kitty shanae's request. Her family does not hold a traditional funeral for her instead a couple dozen of her children grandchildren and great-grandchildren have a party in her apartment. They've decorated the place with pink and white crepe. Paper and (00:49:40) balloons. Each person's going to get a rose and put in this space over here. And if they want to say something about mom they can and we have her picture hanging over the table. She was really nice and she was asleep Todd. I'm John be when he really, you know took spoil your grandkids to to an art form remembering any taking care of all my friends and make me very popular always good to watch a basketball game with and she knew what was going on. He was the center. Of our family and our lives. I'm Deborah Amos after Kitty shanae's death her husband Maurice was placed in a nursing home. Then suddenly following his wife by just six days. He died. Hospice isn't for everyone. Some people will always die in hospitals fighting disease or injury to the end and rightly. So but only about 3 in 10 Americans get Hospice Care at the end of life and many who do enter hospice just days before they die experts on Care at the end of life say lots of dying people suffer through aggressive treatment when hospice would be their best option. They argue more people could live better in their last days. If doctors patients and families would more fully accept. The only thing we know for sure that everybody dies. The hospice experiment was produced by John be when it was edited by Deborah George coordinating producer Sasha. Aslanian Project Director. Misha quill mixing by Craig Thorson production assistance from will at Water Ellen gettler, Tennessee Watson Patrick McGrath and Sarah Fazio web production by ocean Kalin. The managing editor is Stephen Smith. The executive producer is Bill Buchanan Berg special thanks to the Madison Dean initiative and Terrence yoke of Brooke Hollow Productions. I'm Deborah Amos. (00:51:54) To see slideshows of Elizabeth Kubler-Ross and kitty Shanae visit American radio works dot-org you can sign up for an email newsletter about upcoming programs and find an archive of past documentaries that said American radio works dot-org major funding for American radio works comes from the Corporation for Public Broadcasting and the members of Minnesota Public Radio funding for the hospice experiment from the JL Foundation American radio works is the national documentary unit of Minnesota Public Radio. This is NPR national public radio, and the hospice experiment will be rebroadcast tonight at 9:00 programming is supported by Clean Air Minneapolis a physician LED Coalition educating our communities about secondhand smoke and Clean Indoor Air more information online at clean air Minneapolis dot-org. (00:52:46) Travel in style with Minnesota Public Radio this September for an exclusive trip to the BBC proms music festival in London. Go to Minnesota Public Radio dot-org for tour details or call 802 to 870 123.